|Name Of Column
||Hooked On The Meeting
||News & Events
||Joel Dunnington, MD
||Smoke Pollution Super Heros
||Attending The IAL
|This Lary Life
|Travel With Larys
||Trip To Israel
|The Speechless Poet
||Len A Hynds
||My Viking Ancestry
||Prose & Poetry
|Bits, Bytes & No Butts!
||Internet Speed & Safety
INDEX AND LINKS TO EACH ISSUE MAY BE FOUND AT: http://webwhispers.org/news/WotWIndex.asp
HOOKED ON THE MEETING?
The IAL (International Association of Laryngectomees) has an Annual Meeting that gives larys from all over the world a chance to get together, learn, socialize, make new friends and greet old ones. At the same time and place, there is a Voice Institute. We at WebWhispers highly recommend that every lary attend at least one Voice Institute. To that end, years ago, we started a scholarship to help those attending the VI. This and other awards are supported by the generosity of some of our vendors.
The VI scholarship is $100 if you apply for it according to the rules found at:
We also have one time Travel Grants which you can read about at:
We have details of this year's IAL AM/VI, as much as we know at the present time, posted in our Notices section, It will be updated at:
I attended my first IAL in 1999 in Reno, NV and came away feeling like... why did I waste years not going? I have made all but one since then and it was not my choice to miss that one! It is fun, entertaining, interesting, and educational! What more could you ask for? WW has it's own Dinner scheduled where we get together for our awards. Checks are handed out for the scholarships and awards mentioned above. Certificates are awarded and, most years, we have a guest speaker. We keep the cost as low as we can and take reservations early so we know how many to plan for. We will have that posted with menu and other details likely sometime in March.
Read Ed's comments in Speaking Out and please plan to attend the Spokane meeting in June 2013.
Another activity for larys, our new cruise is set up in our Activities section:
WebWhispers & Friends is sponsoring a 7 Night Eastern Caribbean Cruise on the magnificent Freedom Of The Seas
sailing from Port Canaveral, FL , October 6, 2013. Invite your friends and family to come along! Check it out here:
The Florida Laryngectomee Association will be wrapping up their meeting in Orlando, one week before our cruise leaves, from Port Canaveral so many of us will be flying in to the Orlando airport and taking a shuttle from there. If any of you want to do a "3 in 1" trip, you might want to go to the 3 day conference in Orlando, spend the next week there for Disney World and the other attractions, then come over to Canaveral and board the ship with WebWhispers. Info on the FLA is in our Notices section along with the IAL information (see above).
Tobacco Smoke Pollution and Laryngectomy Patients
Joel Dunnington MD
Professor of Radiology
Although it is usually called secondhand smoke or environmental tobacco smoke by the tobacco industry, in reality it is Tobacco Smoke Pollution (TSP). This is the smoke emitted from a cigarette sitting in an ashtray and the smoke that is exhaled by a smoker. Cigarette smoke contains over 7,000 chemicals according to the Surgeon General, but the tobacco industry’s own documents talk about more than 100,000 chemicals produced when you burn a cigarette. Many are highly toxic and over 70 are carcinogenic, meaning they are known to cause cancer in animals or humans. Some of these chemicals are nicotine a very toxic insecticide; arsenic a poison used to kill rats; carbon monoxide a poisonous gas; and radioactive lead and polonium.
The current estimate is that TSP causes 50,000 deaths in the US each year. There are very few things that kill more Americans than TSP. This is in comparison to 33,000 traffic fatalities and 394,000 deaths from cigarette smoking each year.
Why are laryngectomy patients special and more susceptible to TSP? The normal anatomy of the nose and throat that used to filter out some of the chemicals has been altered and removed. Thus the pollutants go directly into the windpipe. And since the vast majority of laryngectomy patients became that way because of their smoking, they often have significant heart disease already. In addition, they already have many years of exposure to smoke in the lung. More smoke from TSP then makes them more susceptible to a second primary lung cancer.
Tobacco smoke pollution not only causes cancer, but more importantly it has a pronounced effect on the heart. Recent studies have demonstrated that TSP has a significant effect on the endothelium (the lining) of the coronary arteries. The TSP causes damage to the lining of the arteries and causes existing fatty plaques in the arteries to burst and cause heart attacks.
Other recent studies have shown that the amount of smoke necessary to cause damage to the endothelial lining of the arteries is at the level of TSP, not necessarily as concentrated as primary cigarette smoking. The amount of smoke in a restaurant or bar that allows smoking is more than sufficient to cause heart attacks, especially in people with existing heart disease.
Ventilation systems installed by restaurants and bars do not clear the air of all of the toxins.
There have been two entire Surgeon General Reports on Tobacco Smoke Pollution published. The Surgeon General has stated there is no safe level of tobacco smoke pollution. There is no legitimate scientific source that does not believe that TSP is deadly. Only smokers groups, often funded by the tobacco industry, still promote smoking and second hand smoke as safe. So, stay away.
Joel Dunnington MD
Professor of Radiology
Director GI Radiology
Diagnostic Radiology, Unit 1473
University of Texas MD Anderson Cancer Center
PO Box 301402
Houston, TX 77230-1402
As I navigated the crowded aisles of a grocery store just before Christmas I was zapped by Batman. He was about 6 or 7 and I would have known him anywhere since he was in full Batman regalia: face mask, cape, laser zapper and vigilantly checking for bad guys.
I actually got targeted but his Grandmother admonished him, “No, honey, she’s a nice lady. Don’t zap her.” She was embarrassed a bit and apologized. I replied it was quite all right. It was good to know he was out there protecting us all. We both laughed and as I turned to smile at him I realized he was staring at me gape-mouthed.
“You shouldn’t shoot me. I’m on your side. I’m a Super Hero, too. Can’t you tell by my Super Hero Nanny Robot voice?” Incredulously he replied, “You’re joking with me, aren’t you? That’s not your real voice! How did you do that?”
The grandmother was great. She answered him, “No, that is her real voice. See how she has that place on her neck?” Gesturing to her chest, “It’s like Meme’s port. This lady did lose her voice and uses that to talk.”
I nodded and said without my Servox you couldn’t hear me talk and demonstrated how it worked. He was spellbound.
“So, see, I am like a Super Hero because I have a special voice. That’s why I am a Nanny Robot.” And I buzzed it towards him for special effect. He was suitably impressed! His grandmother laughed, thanked me for taking the time to talk to him and we wished each other Merry Christmas.
I kept on shopping and as I rounded the last aisle I nearly collided with Batman. This time I did not get zapped. I got a mega-watt Batman smile and a shout out, “Grammie, look, it’s that girl with the voice!” She laughed and told me he was so taken by me and my voice it was all he had been talking about.
I buzzed him, “Keep up the good work, Batman!”
It made my day, I tell you. There are times when I try to juggle grandkids, voice, diapers, discipline and lunch or sing Christmas carols and tell stories that I get extremely frustrated with my voice and its limitations.
But on one hectic day I was a Super Hero to a very special little Batman and that was cool.
ATTENDING THE IAL?
Ed Chapman, President - Southeastern Washington Laryngectomee Club
(Ed's club is one of the host clubs for the IAL in 2013)
The Southeastern Washington Laryngectomee Club was started in 1969 by Romaine Olsen and Alice Shaw, two speech-language pathologists who worked in the school system. However, Romaine's husband, whom had recently fought cancer, and Dr. Pyke, an ENT, asked Romaine if she could help a recent laryngectomee. That was the beginning of the club. Membership has varied throughout the years with a maximum attendance of 25 and as low as 3 members.
We have been fortunate enough to have Susan Bruemmer, a speech-language pathologist, as an advocate for the club from 1978 to present. Even in the leanest of years, when the membership was down to three, Susan held the club together with the attitude that we needed to be there for the that one laryngectomee that may come along at any time.
Over the years members have come from as far away as Goldendale, Walla Walla, Milton-Free-Water, Seattle (when there wasn’t a support group there) or in other words as much as 5 hours of travel time all because we have always been there for support.
The club has met at various facilities throughout the years including the rec room of the Pasco Housing Authority, the Pasco Senior Center, and currently we meet at the Tri-City Cancer Center/Wellness Center in Kennewick, WA.
Focus of the club has been educational but mostly social...a place where laryngectomees can feel comfortable asking questions, talking, and finding out helpful hints from other laryngectomees/caregivers. We always have a luncheon provided by a member and have potlucks in June and December. We meet the first Sunday of every month except January, July, and August. We have a Loan Closet with assorted laryngectomee supplies. Pre-op and post-op visits are provided as needed by an SLP and laryngectomee.Members have encouraged and been active in the revitalization of The Spokane support group that now meets the first Monday of the month.
The Southeastern Washington laryngectomee club and the Spokane Laryngectomee Club are working together (with the support of the Portland, OR. and Seattle WA. clubs) to host the 2013 IAL meeting and Voice Institute in Spokane. We are planning some new activities (that will be announced by the IAL at a later date) and with the meeting hotel, The Red Lion Hotel by The Park, being within walking distance of a major park and downtown, including a mall and 40 some restaurants, we hope to have a venue for all to enjoy.
Come visit us anytime.
Marlene E. Haynes, Webb City, MO - 1996
Oh yes, I have attended many IAL conferences and each year come from there with such a feeling of belonging and I always make my friendship list longer, wonderful people always attend and I enjoy talking to them and getting to learn and hear how others live.
The IAL conference is a wonderful place to learn, I highly recommend anyone that has never been before to attend take the Voice Institute, if you can. Looking forward to Spokane, 2013.
DeWayne Boesen, Kenesaw, Nebraska - 2010
I have been one of the luckier ones. I did not have to have any Chemo or Radiation and my recovery has been fairly uneventful. My Physician is in Omaha, which is about 180 miles one way for me and I have virtually no local support to fall back on.
My wife and I first attended the IAL conference in Kansas City in 2011 and went again in Durham last year. The conference is “OUTSTANDING” and we can’t began to tell you how much we enjoyed attending. I would recommend it highly for any Lary or caregiver. You find out that there are others like you, many of which have much greater obstacles to overcome. We would like to attend again in 2013 but don’t know if we will be able to afford the trip to the west coast.
Pat Sanders, WebWhispers and all the others that are on the board are very friendly and helpful and add to the success of the conference. I only wish I could be more involved.
Neil & Naomi Arnold, Mendota Heights, MN - Aug 2011
Neil and I attended the IAL meeting last June in Durham, NC. It was ten months after his laryngectomy in August of 2011. We feel fortunate we were able to participate. It was a learning opportunity for both of us, but mostly it was so encouraging to be with others who had experienced the same things we had. The positive attitudes of everyone attending was contagious. Learning how to deal with the issues facing laryngectomees, seeing all the vendors and their products, working with SLPs (and having our SLP in attendance with us), sharing the concerns caregivers face are just a few of the benefits from attending.
Meeting the dedicated leaders of the IAL and Webwhispers was a privilege. We hope to attend other meetings in the future to see our new friends and continue to learn, share, and have fun together.
Jim Fohey, Oscoda, MI - Oct, 1994
I was able to attend the meeting in Nashville TN in 2000. It was a real eye opener, I met many people who had much greater challenges then I and handled them better then I know I would have. Met some who had the same challenges or less then I and handled them poorly, in my estimation. But it was a great learning experience and a lot of fun.
I enjoyed the Web Whispers dinner and had a chance to meet Dutch and many folks from all over the world. It is something I would wish everyone had a chance to do at least once, as you gain a lot of insight in to what it is to be a laryngectomee.
Elizabeth Finchem, Tucson, AZ - Oct, 1978
Yes I have attended many IAL meetings since my first in 1981; missing only four AM/VI over the decades due to health reasons or family emergencies. I've also been a regular attendee at CAL meetings and been an invited speaker at a few other Regional meetings over the years. Why so many? My first IAL meeting was important to me as the founder of my local club.
Five years into monthly local meetings I attended my first IAL meeting so I could get some program ideas and learn as much as I could to share with my local club members. I was very surprised to find out about the work the Voice Institute does for new laryngectomees and SLPs that wish to have a hands on learning experience working with new and rehabilitated laryngectomees. Two years later I was invited to run for a seat on the IAL Board of Directors so I could be a part of the planning and operation of the IAL. I'm still there helping to pave the way for the newest laryngectomees. Whether it is local, state, regional or national there comes a time when our issues are resolved and we find we are in a position to help our neighbors.
Ron Mattoon, Seattle, WA - 2010
I attended my first IAL in Kansas City, just over a year after my Laryngectomy. It was one of the best experiences of my life. I learned SO much, but the best part was the people. I found them all more positive and helpful than I could have imagined. I met so many new friends and will consider them friends for life. There was no support group in my area and the things I learned, along with the help I got, enabled me to start a support group and help others. Thanks to IAL and WebWhispers I can live a much fuller life, instead of trying to figure out how to deal with the changes in my life. I encourage everyone to attend IAL, if you have the opportunity. Thank all of you!!!
Richard Crum, Jeffersonville, IN - 1988
I have been to 22 IAL meetings since my laryngectomy surgery. I must say that I have learned something at every one of them. When I started going the meetings were one week for the Voice Institute and one week for the IAL. Because of money and time restraints they have been combined since 1995.
I am looking forward to the Spokane, WA meeting in June of 2013.
Today I held my new born grand daughter for the first time. Kaliegh Ann Mackenzie, It was an amazing time, being she was born on Dec 5th, which is also the 30th wedding anniversary for Barb and me. As I held her I thought what a wonderful opportunity the two of us would have going forward. Unlike most we would be communicating at a different level through emotions and writing.
I thought about how we all start the same, being unable to communicate but feeling safe knowing that first touch, a hug or tuck of a blanket felt like you were where you were supposed to be, with a family that wanted to take care of you.
Then I looked at my life and thought of how similar the situation. I have been given a second birth. A chance to do things differently or enjoy new experiences that I never thought possible.
As Kaliegh opens her eyes, so will I;
As Kaliegh takes her first steps; so will I;
As Kaliegh learns to eat; so will I;
As Kaliegh learns to speak; so will I.
My daughter Janelle is a single mom now, so Kaliegh will live with us.I look forward to learning from a newborn. We are all so fortunate; all we have to do is open our eyes and our hearts.
One Happy Marine
Ted Smith, Class of 2003 TEP speaker, (Oh ya and Jeremy's Dad !!)
Letter received November, 2012 from our WW member Teddy Smith: Surgery March 2003
Hi, my name is Teddy Smith from Montreal, Quebec, Canada. I'm coming up on my 10 year Anniversary of my Laryngectomy in March 2013. I'm the father of 3 remarkable boys , had my surgery at the early age of 36 ( all good since.)
I'm enclosing an essay that my 12 year old wrote last year based on his hero (his dad.) This essay won a Silver metal and has been published in several journals and newsletters since. Of course, I'm biased, but I feel it hits home with the Lary community as I've shared the story with many in my support group !
Jeremy Smith, Age: 11
Imagine learning to talk again at thirty-eight, learning in a completely different way from what you were used to. Imagine having a hole in your neck from which you breathe. Imagine how you would feel if you knew your voice would never be the same. He did all that and more, which is why he is my hero.
His throat was sore, his voice was hoarse. But cancer? How could that be? He had to face the truth that it was cancer, no matter how much he didn’t want it to be, it was. Of course he was worried, scared and even disappointed but he still went through the necessary steps without complaining. He went through tests, more tests and finally the last thing he wanted to do, the operation. He later woke up with no vocal cords, a hole in his neck and instructions how to talk and breathe. At first he had to use a small mechanical device and later on he learned to talk by only using the hole in his neck.
Most people would feel bad for themselves or even pretend like it never happened but he is one hundred percent open about it. He always tries to perfect his voice even though he has no vocal cords. He used to love to swim. Now he can still swim but when he puts his head underwater he has to cover his neck so that no water goes into his lungs.
He visits the people that will be having the same operation and tells them what is going to happen. He visits them afterward to help them learn to talk. People call him to get his opinion on their medical situation. He cares about each of these people and helps them all.
He is very courageous. He never uses the hole in his neck as an excuse and he never gives up on things because of his neck.
If you are wondering who “he” is, he is my dad. It is for this and so many other reasons that “he” is my hero.
TRIP TO ISRAEL WITH THE ARNOLD'S
On October 24th, 2012, my husband Neil and I boarded a plane for a two week trip to Israel and Petra, Jordan. We had been to Israel together in 1987 and I had beenprior to that in 1961 and we were looking forward to visiting new sites and revisiting others. My big concern before leaving was to make sure Neil could travel with his *Magic Bullet to Go as he needs to blend all his foods. After many calls to TSA and even Homeland Security as well as obtaining a letter from his primary doctor at the Mayo Clinic that explained his need for the Bullet and high protein liquids, I felt mostly confident we would be able to travel with minimal issues. A Minneapolis TSA agent met us at departure and walked us through which was very helpful and nice. We went through security many more times, at airports, hotels and the Israeli and Jordan borders. One time they wanted to take his Boost but we whipped out our Mayo Clinic letter and the problem was solved. Another time they spent a few minutes inspecting the battery for the Bullet, probably looking for drugs, but let us through. Interestingly, it was the battery and the Boost, but not the blades, that caused security concerns.
We arrived in Tel Aviv on October 25th and were immediately shuttled to Jerusalem where we met our six friends. We spent five nights in Jerusalem, visiting both Christian and Jewish sites including Bethlehem, the Old City of Jerusalem and the Church of the Holy Sephlehcure. We prayed at the western wall, walked the Via Delrosa and spent a morning at Yad Vashem (Holocaust Memorial). We made a day trip to Masada and the Dead Sea, visited the Israel Museum, shopped in street markets as well as Ben Yehuda Street and the Cardo. We then traveled to Tiberius, Haifa and the Golan Heights for two nights and finally spent three nights in Tel Aviv, a bustling modern city.
We saw archeological wonders at Beit Shean, Caesarea and Old Jaffa. Finally, Neil and I split from our group and flew to Eliat where we were taken to the Israeli border and crossed to Jordan. We were met by our Jordanian guide and driver who took us to Petra, probably the most beautiful sight I have ever seen. It has been named one of the new Seven Wonders of the World and deserves the title. It is truly spectacular. The next day we did a jeep ride in the Wadi Rum, a beautiful valley in Jordan, had a driving tour of Aqaba and then Eliat, before flying back to Tel Aviv and then home. It was a fabulous trip and went almost without any issues.
Neil had no problems traveling related to his laryngectomy. The weather was beautiful but never too hot so breathing was not an issue. He tired at the end of the day, but we all did. The Bullet to Go was a lifesaver. We could not have managed without it. He was able to charge it at night in our room but did not have to depend on power during the day. He made his lunch at breakfast most days so all he had to do was give it a quick mix and he was ready to eat. We carried enough Boost with us so he could supplement his meals if needed. Since we did a lot of walking it sometimes was a pain to have to carry the Bullet bag with us, but in the scheme of things, that was pretty minor. I think we feel we can still travel most places, just with good pre-planning to anticipate any problem areas.
Naomi Arnold, caregiver/wife of Neil Arnold, August 2011
*We have found out that the Bullet to Go has been discontinued. We are guarding ours carefully as being able to be on the go without being dependent on electricity made things so much easier, especially where the electric current is different. We still use a Bullet with power at home or at friends homes. If anyone knows of any other battery operated blender that is good we would love a recommendation.
Photo 1. Neil eating dinner on the plane to Israel, using his Bullet to Go
Photo 2. Neil and Naomi. View from Mount of Olives overlooking the city of Jerusalem
Photo 3. Neil in Petra, Jordan
Photo 4. Neil at the Jordan River
My Viking Ancestry
Adventure was always in their hearts,
those Viking men of old,
sailing into unknown parts,
in their search for gold.
Odin and Thor, their gods so feared,
with hammer and sword in hand,
were with them as each coast they neared,
to raid that trembling land.
From Denmark’s island of Odanse,
my ancestors, they set sail,
dragons’ heads, their fearful glance,
to make the bravest pale.
To Rogueland Fjord in Norway,
to join a Viking fleet,
and reaching England, that very next day,
for pillage and treasure sweet.
They then went North around Scotland,
and made Tiree their base.
But the clans they were so close at hand,
in the glen, for them to face.
The Vikings suffered dreadfully,
many killed and captured men.
Beached long-ships lost so painfully,
only forty sailed again.
Of my family boats, only one escaped,
now only thirty Vikings strong.
Of those alive but captured,
their treatment was hard and long.
But in time, became the men at arms,
for the Scottish Laird,
freed at last, and starting farms,
and in that land, they fared.
My own branch, it sailed on,
settling in the Irish South,
helping Dublin Town to grow,
close by the Liffey’s mouth.
Generations marrying Celtic maids,
the two branches slowly grew,
no longer thoughts of Viking raids,
now Irish or Scottish true.
It was the potato famine,
when so many from Ireland fled,
and my grandfather, to England came,
so I’m an Englishman instead.
But in my genes, I love the sea,
from the Irish, poetry too.
What a strange mixture for all to see,
but that is probably true of you.
Internet Speed and Safety
Do you use a Domain Name System (DNS)?
Wikipedia defines it fully here:
They use a lot of geeky words that mean there is a service that finds you the safest and most common links to the questions you ask and sites you visit. A good DNS service protects you and your family from phishing malware and increases the performance speed of your Internet service.
Your Internet provider normally has a DNS for your protection, however there are other providers that, in general, offer more at little or no extra cost. You can learn more about this at their sites:
Do you get your Megabits worth?
Your Internet Service Provider (ISP) charges you for their service depending on the bandwidth speed option you select. If you are not tied into a “bundled service contract” you can generally save money by asking for the ISP's “economy” service. With the speed of today's broadband the economy service is more than ample for the average home user.
The following are free test sites you can use to measure your internet speed. Results may vary a bit from one to another, but all should be pretty close. You can measure both your download and upload speeds at the same time.
PC Pitstop http://www.pcpitstop.com/internet/bw.asp
Do you find yourself wanting to have a cup of coffee with a favorite friend? Be sure to check into the Webwhispers Forum during the week and join the rest of us in sharing information in a "coffee in the morning" sort of way.
All sorts of “hot” news and tips that make our lives richer and just plain fun. You'll find everything from Lary issues, life lessons, Marlene's greatest tips ever, and just plain fun. If you're not using this great little bit of high tech you are missing one of the best things in our Lary life. Hope to see you there.
WW FORUM: http://forums.delphiforums.com/webwhispers/start
(Remember, if you have not joined Delphi yet, you need to do that. Then you should ask for the code and they will send it to the Forum Manager, who will check to be sure you are a member of WebWhispers, since it is a private group for WW members only. The Forum Manager will send it and you use it the first time to get into the forum and should never need it again.)
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Managing Editor - Pat Wertz Sanders
Editor - Donna McGary
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
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